This Is MS Multiple Sclerosis Community: Knowledge & Support

We were given a tremendous gift yesterday. Dr. Mark Haacke has challenged the MS/radiology world to look at a new paradigm. He is a giant in the world of radiology and disease diagnosis.

If you live anywhere near a university that has a radiology department and diagnoses MS using MRI...PLEASE do this. (radeck, I'm talking to you-dear friend)

Send Dr. Haacke's website to the school with the following introduction:

"I am an MS patient and I have been following the progress of studies in CCSVI in MS. I will donate my services to be tested by your school, following Dr. Mark Haacke's protocol."

http://ms-mri.com/

Send it in e-mail format to the head of the radiology and vascular departments, and the neurology department (if you're feeling brave) Make follow up telephone calls every couple of days.

I promise you I will do this for you all this week at UCLA and USC in southern California. I only had Zamboni's research- and these universities weren't interested last spring. Stanford was the only place that would listen. With Dr. Haacke's brilliant website, we have a game changer. It has a 3D picture!!! (no need for glasses!)

http://ms-mri.com/

It breaks my heart that we have MS patients who understand this concept and have no way to get help...and obviously, Dr. Haacke feels the same way-


cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thanks Cheer for the encouragement. I have sent the website onto both the vascular dr's I have consulted with...I will follow up with a call x

Dear Cheer, thank you for the encouragement. However the only university hospital that does MRI's and is a tiny bit closer to where live than Stanford is UCSF. MRI's there seem just as expensive as at Stanford (my last head&C-spine one was over $15k, yes, that's fifteen thousand, on a regular 1.5T scanner), so I don't see right now why my insurance would cover my getting the scans I need there, but not at Stanford. I found out yesterday that Stanford charges $14k on average for all the MRAs needed. Since it also adds chest MRA, this seems to be less expensive than UCSF.

When you say "university hospital", do you mean "state university hospital"?

I will cover the University of Michigan. I was already referred by my non-MS neurologist (who I follow up with on the 16th of Oct.) to an MS specialist, who I see at the start of next year. I can inundate them with my presence all the way up until they meet me in person!

This is really a great gift, isn't it? I don't know if it would be beneficial for us to offer ourselves for the testing though if we already know that we have the abnormality, right? I think they want it to be random testing.

radeck-
Hypothetically, if this is a part of a study, the university should cover the cost- that is how clinical trials are run. You'd have to "sell" it to the radiology department...a chance to be part of a groundbreaking diagnostic procedure, working with Dr. Haacke...and offer your services for "free". You'd be doing them a favor by sitting in the tube for a couple of hours. It's worth a shot. Tell them you are bringing it to "competing universities" and that Stanford is participating. Always good to get the competitive vibes going in academia. This is about salesmanship. We're trying to light a fire

Here's the protocol-
http://ms-mri.com/protocol.php
It doesn't say anything about random patients...I think it's fine to be self-referred and know you have MS. An educated patient is a good test subject.

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I hate to say this, but this isn't how clinical trials are run. The university hospital usually gets a grant from someplace like NIH or the NMSS, or they get funded by a pharmaceutical company. They don't usually have the money to do this on their own. Universities aren't exactly awash in money, especially these days.

Patient I have to disagree with you in some ways. When I told my vascular specialist about Zamboni's work he told the radiology dept who then offered me to have the doppler for free as they were interested in the theory. Sometimes they do get involved as they want to be a part of something new.

I sent it to the head of Vascular Surgery @ the Mayo Clinic, and to Society for Vascular Medicine just to see if anyone there might get interested.

The University hospital here in Denver funds their departments with grants and $ from pharmas, medical device companies, and private foundations. They depend on money from trials to keep the doors open. In the Spring when I presented Dr. Zamboni's research to the neurology, radiology and vascular depts, I received comments like "not interested", "too early", "hasn't been proven" from these departments. We now have the press release from Bologna, and we have Haacke's website to piggyback with Zamboni. I am trying again - right now I just need a good dose of patience. I am getting positive feedback from some very influential MS neuros - I am hoping that one of them will be writing an article on CCSVI for the NMSS in the not to distant future.

Sharon

I could see that happening at some places here in the States, too, performing the scans on a case-by-case individual basis. But for a larger scale study, I don't think the research hospitals would be able to absorb the costs alone.

Us 3 Tims members from CT are all sending individual notes to all of the interventional radiologists at Yale. It's our best bet in Connecticut. Hopefully someone there knows Dr. Dake or one of the docs who presented in Bologna and will reach out for more info.

i passed on this information to Dr Alan R. Moody in Toronto

Radiologist-in-Chief
Department of Medical Imaging
Sunnybrook Health Sciences Centre

and heres his reply

Strangely I heard of this project the other day and thought of you. Haacke is also cross appointed at McMaster Hospital in Hamilton and we have tried to do some collaborative work with him but did not get funded.

_________________
Had ms for over 19 years now.

Nice work, Robbie! Glad to see the "coincidences" are working for you. Also hope you're able to keep practicing your walking with your new antibiotic protocol...
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

too bad, the money that gets wasted around the world would sure come in handy for this , (somethiong that matters) while the rich and crooked keep getting richer.

_________________
Had ms for over 19 years now.

Hey Sharon,

I see you are in Denver, are you being treated at the Rocky Mountain MS Center? If you get anyone to bite on this research in the Denver/Colorado area please let me know! I'd love to join you!